My friend just got an ileostomy

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flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 5/24/2011 9:18 PM (GMT -6)   
My friend just got an ileostomy due to colon cancer, and she's doing really well. I stopped by to visit her in the hospital today, and the ostomy nurse came in to change her wafer. She asked me to stay, so I sat in a chair and chatted with her while the nurse did her thing. Thanks to all of the communicating I've done on this forum, I felt really comfortable talking with her about my ileostomy.

It makes me wonder, do any of you know someone personally with an ostomy? I've had one for 5 years, and this is the first time I've been able to be there for someone I know personally and feel really blessed that she knows she's not alone.
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 5/24/2011 9:23 PM (GMT -6)   
we had a family friend who had a colostomy and an urostomy due to spinabihida, i never got to speak to him about it, because of some odd cirumcumstances, and he has died since then. but it actually helped me at first since i knew he had one, and knew i couldnt' see it, and that it didn't smell and all those things.
i wish there was a group near here, so i could help people in person who had questions.

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 5/24/2011 10:37 PM (GMT -6)   
My sister quite unexpectedly had emergency surgery 2 weeks before my husband's scheduled surgery which was a shock. Needless to say we are comparing notes and sharing info back and forth. Since I am the one on these boards I am constantly sharing info to the both of them and keeping them up to date on what I keep learning here.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 5/25/2011 5:44 AM (GMT -6)   
I know a lot because of my support group, but no one in my "regular" life :)
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 5/25/2011 7:19 AM (GMT -6)   
I met someone through the Crohn's and Colitis foundation and I also went to a support group last month, but like 80's chick, not one in my "regular" life, although I have become friends w/the woman I met though CCFA, so she's in my regular life now. I did hear about all kinds of sister-in-laws of my cousin's wife's mother and that sort of thing....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

stinky123
Regular Member


Date Joined Apr 2011
Total Posts : 20
   Posted 5/25/2011 7:56 AM (GMT -6)   
When I had my emer.surgery, my mom told me her cousin went in 2 days before. That was really weird, but I did call her and she helped me with some questions about gas. It was really nice to speak with someone I knew. It's great you can be there for your friend. My husband was supportive but you know how shes feeling. smilewinkgrin

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 5/25/2011 11:38 AM (GMT -6)   
Again,
 
Have not known anyone in my "regular" life with an ostomy.  Of course, one of my GI's said before surgery that, "...you've probaby had someone sit next to you with an osotomy and didn't even know it.."  Which, is probably true...
 
I've met several folks through a couple of ostomy groups, and talk to them quite a bit (especially now after surgery...sort of like this website....)
 
Of course, "regular" life is changing by the minute/day, so we can all probably say after awhile that we do know people with ostomies...
 
If you haven't been to an ostomy support group, at least call one...there may be folks near you that you don't even know that have an ostomy.....worth a try....
 
enigma
 

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/25/2011 1:50 PM (GMT -6)   
I have met many jpouchers over the years but those were arranged meetings after having met online. Many have become very close friends. I have never met a jpoucher just by chance.

Sue

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/25/2011 5:08 PM (GMT -6)   
i got to know someone about my age about 6 mons ago in a forum (israelie) and we've become totally best friends. she's the one who started the new israelie forum with me. also, through the forum we got to meet some more ostomates and we do meetings from time to time. there's also a support group here that arranges meetings and trips for ostomates.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/25/2011 5:51 PM (GMT -6)   
My husband's uncle had a permanent ileo when he was a teenager due to UC...and is a great role model as to living life to the fullest!! AND...a friend I grew up with's husband and I had our ileo surgeries about the same time...he has since gone on to a j-pouch!

I have also met many people through CCFA, support groups and volunteering and have made some wonderful friends, too smurf

Your friend is very lucky to have you share your experiences...knowing that someone has made the transition to 'normal' life is a great help when adjusting :-)
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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